GP Questioning Diagnosis

Hello,

I have recently been diagnosed with Asthma, I am 36 so this is adult onset.

My journey started a couple of years ago when I had a bad flare up following exposure to a large amount of dust (the office air conditioning unit was serviced by my desk and produced what I can only describe as a dust shower). I suffered with quite bad breathlessness and coughing. I saw my GP at the time who said it did seem to be an allergic reaction considered the possibility of asthma and prescribed me inhalers, firstly just a reliever but when it didn't clear up a brown preventer which did do the trick. When I saw the doctor again I questioned a diagnosis of asthma but he shrugged me off saying that I would need lots of tests and it would be better just to keep using in the blue inhaler before exercise and in cold air (as seem to be triggers for me and in hindsight had been for a while).

I managed like this until last October when I had another flare up, my chest was really tight and I was really breathless, struggling to even walk around the house, it became really uncomfortable and my chest was sore through the strain, I was also getting light headed and lacking energy. I obviously left it too long but I was pretty desperate by the time I phoned the doctors and when I couldn't get an appointment just asked them for a prescription for a brown and blue inhaler which they agreed to. It did improve and within a few weeks I was feeling quite a bit better but made an appointment at the doctors to discuss my lingering cough and any next steps (eg how long should I continue with the brown inhaler and did I actually have asthma?).

I saw a new doctor at the practice who was really nice, listened to everything I had to say, examined me and advised that she did think I had asthma but couldn't do any tests because I had been taking a preventer inhaler for too long for the results to be meaningful, she gave me the option of coming off it but neither of us thought this was a good idea so she diagnosed based on symptoms and sent me for a chest x-ray to be on the safe side re the long lasting cough. The x-ray was clear, I got reviewed by the nurse and got my flu jab, I continued with my Clenil inhaler, taking 2 puffs morning and night each day. Things were going OK and I only had to use my blue inhaler in cold weather and for long walks.

Unfortunately, I had another flare up again just before New Year after cleaning my bathroom with strong cleaning fluids (silly I know). This resulted in a bad cough and some breathlessness, it was getting better but yesterday it flared up badly again and I am pretty sure I had my first actual asthma attack. It was awful I could hardly breath and could barely talk. I followed the guidelines using my blue inhaler and eventually my breathing did improve but I felt pretty lousy (light headed). I took the rest of the day off work and rested up for the afternoon and I managed to get an appointment with at the doctors where I saw the original doctor. He has really confused me by questioning if I even have asthma as I don't wheeze 'very much' and my peak flow was about 300 (not that great for a 5f 6 woman), he also questioned how I can suddenly have asthma if I don't smoke or work with chemicals. He advised me to up my brown inhaler for a few days to 4 puffs twice a day (why, if I don't have asthma?) and asked me to book in with the nurse for spirometry tests, I questioned this as I have been on prevention medication for months but he said it would be OK. He said because I didn't wheeze allot even I did have asthma it must be really very mild and nothing to worry about. This opinion is very different from how I and those around me feel, who have all noticed that it is getting worse and are quite concerned.

I'm really sorry for the long post but I wanted to provide some context / backdrop to my question. Can anybody offer any advice I am so confused and feel like a fraud, I don't want to have asthma anymore than anyone else but what I do need is an explanation and effective treatment for my symptoms.

Thanks in advance,

Catherine

10 Replies

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  • Don't feel like a fraud, non-wheezy asthma is a thing: cough-variant asthma. I had my first flare up as an adult at New Year and I had problems getting it recognised and getting what I needed too, so you're not alone. I put up with it for nearly a week and my peak flow had dropped to 330 from 470 by the time I'd actually started the steroids (which I had to beg for, no kidding, I nearly cried in the doctor surgery cos I was so tired from lack of sleep). If you take a lot of Ventolin to bring an attack under control then light headedness and shakes can result, it certainly happens for me and my lungs actually ache with frequent Ventolin use too. On advice of the asthmaUK nurse helpline I emphasised to my GP (second visit 5 days after attending out of hours at 5am) just how many times I was waking in the night needing Ventolin and that what I'd taken over the night exceeded a nebulizer dose and still had not resolved it. Sounds like those chemicals you were using were pretty noxious, what was in them that was different to other stuff you have used in the past? People have all kinds of triggers for asthma , you sound pretty well controlled when you're not exposed to a trigger, similar to me, I don't need my brown inhaler at all unless I have a cold and just use the blue before vigorous exercise. Sometimes you don't know a trigger till you've encountered it though which sucks. At the moment I'm on 8 puffs a day of the brown inhaler (max recommended dose) and just coming to the end of a 4 day course of steroids, I think if I hadn't begged for the steroids I probably would have ended up in A&E cos the brown inhaler really wasn't making a difference. How are you at night? Sleeping ok? My peak flow is always better in the day which also makes it hard to convince people there's an issue, wish they could hear the horrible dying noises I make in my sleep when my lungs spasm!

    With cough variant asthma it can always be there lurking even if you aren't actively medicating it. You might have had it a lot lot longer than you realise. I had asthma as a young child and I have dim memories of nebulizers and inhalers but it was actually a lot worse than as perceived by my childhood self. So it's not that surprising it's come back to bite me later after years of having 'grown out of it'. But if it comes on as an adult it is a good idea to explore the causes and make sure nothing else is happening in the background, asthma symptoms can occur with any form of lung inflammation, even bronchitis and pneumonia, so it's right for your doc to be suspicious, better than the complacent approach taken by your previous GP. So yeah, go along with the tests and stuff and see how you go, it might be worth going to an allergy clinic too from the sounds of the two major triggers you've described.. Also do you have any peak flow readings from when you have been well? It's good to have them as a comparison so you can decide more confidently when things aren't right, although they're not the be all and end all and needing your meds more frequently is a pretty good sign something ain't right. It took me ages to get some normal ones on record cos I only need my brown inhaler prescription refilled when I'm ill, haha, so my peak flow was always rubbish! I have an app on my phone now to keep track of things. The asthma UK website has some great asthma action plan advice and I found this Aussie handbook for exacerbations pretty informative too:

    I've written a lot here but having just gone through a flare up myself I hope it helps a bit!

  • Bum, thought it'd let me edit my post but apparently not on my mobile - here's the Aussie handbook link:

    asthmahandbook.org.au/manag...

    Abbreviations:

    ICS- inhaled corticosteroids (your brown inhaler)

    LABA - long acting beta agonist (Serevent, symbicort and so on)

  • I really don't understand your doctor saying your asthma isn't bad because you don't wheeze very much and only cough. I'm exactly the same but i think i'm lucky that the nurse in my surgery didn't actually question what my symptoms were, just how often i was needing my blue inhaler. By going on my descriptions alone i'm now in the process of trying out different combination inhalers to see if we can find one that suits me and allows me to exercise symptom-free, well i can hope anyway!

  • Spirometry isn't the most pleasant test, but it's not something to worry about either. It's normal to do it when on preventor meds (well, for me anyway), although they will probably ask you not to take LABAs or SABAs for a few hours before. They should do a few spirometry tests over a period of time (months/years) and make comparisons to see what the differences are between when you're well and when you're poorly. The result will come up as percentages of lung function compared to an average for your sex, height and age, which is not necessarily all that useful until you've got several results of your own to compare with each other. For instance my lung function is very good and my best is 127% when compared to the average, so if I just did a one off test, say when my lung function is 70% of best it would look like I'm well compared to the average when I'm actually poorly.

    I hope you find some answers and some improvement soon x

  • CSW78: I recommend you change your Doctor cos it sounds like you have cough variant asthma.

    I developed it to when I was 40 after being super-fit for years.

    Seretide the purple inhaler from GSK cleared it up completely for me.

    though there is now a cheaper generic version called Sereflo too.

    Good luck!

  • Sorry my reply is a bit late in the coming but I just thought it worth mentioning that a lot of doctors seem under the opinion that no wheeze = no asthma. I have cough-variant asthma (CVA) so I'm either coughing and struggling to breathe or I'm not moving around enough air to cough ergo not moving enough air to wheeze. I've had far too many people - including my own parents - think that I can't be having an asthma attack because I'm not wheezing..

    To Stroller from Lancashire: that must be a Lancs. thing! I'm on Seretide too and it's been the best for me so far, although I was only controlled on the 50/25 one for a few weeks and now I'm gaining control on my yellow-zone 125/25 inhaler and can't seem to step back down :( The first time I had it, though, I felt amazing. I could finally breathe properly and I was amazed that this mist could do all that for me! I didn't know about Sereflo..apparently, though, when you are no longer exempt from the prescription charge (me in two years…!!!!) then it is immaterial whether your medicine costs £50 or 50p, you still have to pay the £8.05 Rx charge..is that right??

  • ..apparently, though, when you are no longer exempt from the prescription charge (me in two years…!!!!) then it is immaterial whether your medicine costs £50 or 50p, you still have to pay the £8.05 Rx charge..is that right??

    Seretide cost about £62.50 the last time I looked

  • Yeah

    My point was that it would still only cost £8.20 (it went up recently) for a a refill of Seretide

  • I have only just been given the diagnosis of asthma - the first doctor i saw like your own experience said it might or might not be asthma and gave me the blue inhaler but I had to go back as I was using it up to 5 times a day. I saw a second doctor who said it was asthma - luckily for me the doctor was running half and hour late and the existing irritation in my chest combined with the strong disinfectant smell in the waiting room completely triggered it and I was gasping by the time I got in there and he said there was significant irritation when he listened to my chest. I'm now trialling the brown steriod inhalers which worked well at first but the first doctor I saw gave me a phone consultation after a couple of weeks on these and stepped down my dose as they were working without even seeing me in person and since then I'm back to the blue inhaler at least twice a day everyday and the steriods twice a day too :-( review booked for end of this month so hopefully they can give me something different / stronger.

    My main symptom is a persistant cough, dry and wheezy sounding, but apart from that I don't actually wheeze and don't produce mucus with it. I also have a really tight feeling in my chest and am sometimes gasping for air when I come into contact with certain triggers. I've had a few events where I've just been sitting down watching TV and then suddenly had uncontrollable coughing, gasping for air and can hardly speak. I've never had to be taken into hospital so some people don't actually believe I have asthma. I am 34 so people think I'm too old to develop it and as I'm not near death it's not an issue, or that it must be mild and therefore not serious. Luckily my blue inhaler works well, especially since I changed to Ventolin from the dry powder easyhaler type.

    Despite having a diagnosis from the second doctor I saw when I spoke to the first doctor and said I had been told by her colleague I had asthma she said 'oh, is it asthma?' as if it wasn't on my notes. Also, they have never checked my peak flow (although how can they over the phone - access to GP's is so ridiculous nowadays!) and I've never had any other tests. From reading up it is classic CVA with triggers of pets, dust, hayfever, exercise, cold air, strong perfumes, cigarrette smoke, etc.

    Anyway my advice to you is keep asking the doctor questions, keep going back and making sure you are happy with your diagnosis and medications. From reading these forums it seems that although many of us share the same symptoms, diagnosis and medicatiosn we are all individual and what works for 100 other people may not work for you. I've also seen that a lot of others have obviously suffered much more severe symptoms than me and for much longer but it is still important for everyone to be comfortable they have the correct diagnocis and support. Also, there is a lot of medical terms and medication references, etc, banded about when you talk about asthma but if you're anything like me I don't relate to these so if you're not sure ask the doctor or asthma nurse to explain things.

    Hope you manage to sort it all out soon.

  • seretide 250 costs about £74 now :-o

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